Missouri set to be fourth state to adopt Simon’s Law; Simon’s mother present for final vote

Missouri is set to become the fourth state to enact a law to keep do-not-resuscitate orders from being issued for children without a parent’s knowledge.

Sheryl Crosier receives a standing ovation from the Missouri House as the bill named for her son, Simon, is given the final vote to send it to Governor Mike Parson, who is expected to sign it into law. (photo: Tim Bommel, Missouri House Communications)

The House and Senate both unanimously voted to pass House Bill 138, “Simon’s Law.”  It would prohibit a health care facility, nursing home, physician, nurse, or medical staff from putting such an order in a child’s file without permission from a parent or legal guardian.  That permission could be written, or given orally in the presence of at least two witnesses.

The bill is named for Simon Crosier who died at three months old.  His parents say a DNR order was put on his chart without their knowledge.  His parents say when the monitors in his room went off as he died, no medical staff responded and they were left wondering why.

The vote to send the bill to Governor Mike Parson (R) was taken as Simon’s mother, Sheryl Crosier, watched from the side gallery.

“I have three other children [in Missouri] and they’re finally safe,” Crosier said tearfully after its passage.

“I seriously had been thinking what would I do if one of them would end up in the ICU.  You don’t know what could happen.  I mean, it could be something as simple as falling off a bicycle.  It could be a 16 year-old getting into a car accident,” said Crosier.  “In the back of my mind I’m like, ‘I’m going to have to probably get them to Kansas because they have Simon’s Law,’ and I felt like they were more protected, but I don’t have to worry about that now.”

The bill was sponsored by Buckner Republican Bill Kidd.

“There’s been a lot of tears shed over the last five years as I’ve listened to women from across the nation who have had the tragedy of a Simon in their life, and I came here to make a change,” said Kidd.

Earlier versions of legislation with the same aim met with opposition, including from doctors, nurses, and even other parents, who had concerns about the position those versions would have put them in.  Kidd found himself agreeing with many of their perspectives, and worked with all those groups over five years to arrive at this language.

“We had to come up with a solution that would be acceptable to say okay, how can we make sure the doctor can’t do this, and yet have the parents involved, because what I really wanted was I wanted a conversation between the doctor and the parents, and I wanted the parents to make the decision,” said Kidd.  “It’s easy to say when you talk about it.  It’s difficult when you put it into words for law.”

Sheryl Crosier greets Representative Bill Kidd after the House voted to pass the bill named for her son Simon, and send it to Governor Mike Parson for his consideration. (photo: Tim Bommel, Missouri House Communications)

Kidd said this bill might not prevent every situation that would be similar to Simon’s, but now if that plays out again, parents will be able to hold doctors accountable.

“We’re not trying to make it difficult for the doctors and we’re not trying to make it difficult for the families.  We’re trying to get everybody to communicate in a very emotional, difficult situation, so that the best thing is done for the child on both sides, and everybody understands,” said Kidd.

Kidd says he anticipates Governor Parson will sign HB 138 into law.  It would then take effect August 28.

Both Kidd and Crosier say divine intervention played a role in bringing them together five years ago before Kidd had been elected, and in Simon’s law becoming law.  They note that the first version of the legislation was pre-filed on December 3, 2014, at 10:45 a.m., the date and time that Simon had died five years earlier.

Missouri would be joining Kansas, South Dakota, and Arizona in having a Simon’s Law, and several other states’ legislatures are considering versions of it.

With HB 138 likely on its way to becoming law, Crosier said she will continue to push for passage in other states and at the federal level.

“I used to fight more from a position of pain, because it was telling, telling, telling [Simon’s] story, and now I feel like I can fight from a position of triumph, and let’s get the rest of them on board,” said Crosier.

As the final vote on Simon’s Law was taken, Kidd addressed Crosier, saying, “Even though Simon lived a short life, he did not die in vain, and he did not live in vain.”

Crosier agreed, saying “Just look at how many more lives are going to be saved because of him.”

House initially approves ‘Simon’s Law;’ would require parents be made aware of end to child’s life-sustaining care

The House is close to voting to prevent do-not-resuscitate orders from being issued for Missouri children without a parent being aware.

Representative Bill Kidd has offered Simon’s Law for four years. (photo; Tim Bommel, Missouri House Communications)

House Bill 138 is commonly known as “Simon’s Law.”  It would prohibit a health care facility, nursing home, physician, nurse, or medical staff from putting such an order in a child’s file without a parent’s permission.  That permission may be written, or given orally in the presence of at least two witnesses.

“This is a parental rights bill that says only you can determine the outcome for your child,” said bill sponsor Bill Kidd (R-Buckner).

The bill is named for Simon Crosier, who died at three months old after, his parents say, a DNR order was put on his chart without their knowledge.  His parents testified to a House Committee last year that when the monitors in his room went off as he died, they didn’t understand why no medical staff responded to try to save him.

Kidd said under “Simon’s Law,” doctors will have to have a conversation with parents about the care of their child, “so that the conversation happens.  So that when the buzzers go off and your child codes, no one stands there like the Crosiers did wondering why no one shows up.”

Kidd has offered Simon’s Law in some form for four years.  Last year’s version would have required written permission from a parent or legal guardian of a patient under 18 years old before a DNR or similar order could be issued.  It was opposed by some parents and medical practitioners, some of whom said forcing a parent to sign off on such a document was “really inhumane.”

Since then, Kidd said he met with hospitals, parents, and doctors to refine the legislation.

“What I discovered in sitting across the table and talking to parents who had been through this was that for many of them it was as if they had signed their child’s death warrant,” said Kidd.  “As I listened to their emotional pain, still reliving that very action, I realized that there had to be a different way.”

Representative Rory Rowland (photo; Tim Bommel, Missouri House Communications)

By including the ability for two witnesses to attest to a doctor having discussed the situation with parents, Kidd says that onus has been taken off of parents, and that has alleviated some opponents’ concerns.  No one testified against HB 138 when it went was heard by a House committee.

Independence Democrat Rory Rowland, who has spoken many times during debates about his son JP who has Down syndrome, spoke emotionally in favor of Kidd’s legislation.

“There will be few times when I will take the microphone and beseech all of you to vote for a bill because it is, beyond a shadow of a doubt, the right thing to do,” said Rowland.  “There is no question in my mind or my soul that what we are doing today is profoundly correct for parents who have children with disabilities.”

The House gave initial approval to HB 138.  Another favorable vote would send it to the Senate.